Eeyore from “Winnie the Pooh” has never been my favorite character. For most of my life, I could not relate to his ever sad disposition. He always seemed so melancholy and intent on seeing the negative side of life.
In contrast, I saw myself as a fairly positive person who was upbeat and optimistic. Most days I could be found with a smile on my face.
Now I realize I was able to stay positive because I had never experienced heart-wrenching hardship that affected all facets of my life — at least, not until our daughter Grace was diagnosed at age 14 with Lambert-Eaton myasthenic syndrome (LEMS).
It has been two years since Grace’s diagnosis, and there are days when I am just downright sad. For a long time, I didn’t want to admit that. I wanted to see the silver lining. I searched for the good on this journey.
But some days the difficulty of this disease overwhelms me and I have to step away for a moment. I give myself time to feel and acknowledge the sadness.
I am sad to watch Grace struggle to do what most teenagers take for granted.
It is hard to see her miss out on activities she would normally have loved. For Grace, going on a church youth trip would be both logistically and physically challenging. Her peers all pack up and go without a care in the world, but she contemplates carefully, assessing the risk versus reward. She chooses not to go.
It causes deep heartache to watch my daughter struggle to speak when her medicine wears off, to lift her out of bed each morning, or to watch her struggle to carry books into class.
Adding to the dynamics of our home is the fact that we have two daughters who are very different. Our youngest loves adventure, travel, and activity.
Grace, our middle child, has a calmer disposition. LEMS has also made her more of a homebody. She feels safe and in control of her surroundings at home and within her routines. She does not want to go into unknown situations for fear her strength and stamina will run out.
A few weeks ago, the weather began to warm up and spring break was quickly approaching. With a year of quarantine under our belts, and a year before that of downsized activity due to the onset of Grace’s illness, we were craving a change of scenery. But COVID-19 still poses a very real threat to Grace, and she wanted to stay close to home, so we decided to do what was best for both of our girls.
My husband took our youngest daughter on a safe vacation, while Grace and I stayed close to home and did more manageable day trips.
It was the practical thing to do, but it was still very difficult. I was sad to miss out on shared memories and family time, and I was sad that Grace didn’t have enough energy to venture out and experience new things.
It ended up being just what we all needed, but a sliver of sadness still permeated our spring break.
So, I acknowledge the disappointment this disease has brought to our family. I recognize it and give myself time to feel it.
But then I get up and count our blessings. This, I know, will help alleviate the sadness as I acknowledge all the good that is happening with Grace’s health and our family.
I will never stop looking for a ray of hope as we walk through this life with LEMS. As Eeyore says, “It never hurts to keep looking for sunshine.”
Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia.
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